Twinkle Toe Shoes cause epileptic seizures?

[tiggger1]

I'm guessing maybe she meant a general letter written up by a doctor outlining the effects those shoes may have on students with epilepsy, seizure disorders, migraines etc, not an actual letter from Jane Doe's doctor stating that the sneakers may be harmful to her personally.
I don't see that as any different from the letters distributed during the H1N1 scare, informing students/parents of the risks of coming to school sick, or not washing your hands, or covering your mouth etc. Or the general letters sent home when a child in the class has lice. No HIPPA laws are violated tehre, just general info that makes it pretty obvious someone has been effected (or infected) and how to prevent it happening again.

thank you that I what I meant...

 

[dzorn]

We don't know if it's only the OP's child or if others parents were called as well but have the same attitude of some that are posting here and are allowing their child to continue to wear them.

You also don't know if those children were wearing them the day before. It may very well be that a note will be comming. Depending on the letter if it going home to the whole school it may need to be approved by the board office.

Denise in MI

 

[PrincessKsMom]

If there is a child with epilepsy/migraines who is affected by these sneakers, then there must already be a doctor's note on file with the nurse/office, in which case the school dropped the ball by not timely informing the parents. If there is not a doctor's note on file with the school, then I don't feel anyone needs to do anything differently until such note is received by the school. Isn't this also the case with IEPs (or whatever they're called?) The school doesn't have an obligation to make any concessions until a need is documented. When I receive official word from the school (principal or letter sent home), then I would gladly make the needed concessions. And I'm not buying the example of trying to keep this as low key as possible and that's why the OP's daughter was singled out. If there is a true medical need, then ALL harm should be avoided. That means EVERYONE is told not to wear their flashing shoes. If you disagree with this, then I ask: Are you going to wait until she has a seizure or migraine which is precipitated by a different student wearing those shoes, and then single out only that offending child? How many seizures will this child have to suffer before everyone is asked not to wear those shoes?

What if the OP worked outside the home (maybe she does, I don't know)? She was supposed to leave work to get her daughter a different pair of shoes? Wouldn't that be creating a hardship for the OP, outside the cost of a new pair of shoes? It couldn't have waited until the next day? If there was such an imminent danger, than someone should have informed parents much earlier, either the parents of the affected child or the school. So why is it that someone else screwed up and it becomes OP's immediate problem?

 

[luvmy3]

We don't know if it's only the OP's child or if others parents were called as well but have the same attitude of some that are posting here and are allowing their child to continue to wear them.

True, but we are discussing what the OP said, and since she hasn't yet updated, thats all we really have to go on. If it turns out that it was all the students, then obviously some posters here would have different opinions as to what is wrong or right in the situation, me included. I don't pretend to now exactly whats going on, I'm just basing my opinions on what the OP has said and what has been discussed through-out this thread.

 

[tiggger1]

I have spend the last hour on the computer at both the epilepsy foundation website and other websites include Sketchers.

On the Epilepsy website it states only CERTAIN types of flashing lights can cause seizures and NOT ALL flashing Lights will cause seizures. They also stated that even in predisposed individuals, many factors must combine to trigger the photosensitive reaction.

I have search the web and have not found any documentation, other than the posts on this thread ( medical or otherwise) that Light up shoes have caused seizures. I have also search Sketchers website and have not found anything stating that their Tinkle Toes could cause seizures and believe me if it was documented they would have need to have medical warning on them because of lawsuits. Also these shoes have been out for a couple of years now..if they did cause seizures it would be fully documented by now and we would have heard about it on the news

 

[dzorn]

Calling customer service of a company that is trying to sell a product and asking them whether their product causes seizures holds about the same amount of credibility as the tobacco companies claiming that their cigarettes didn't cause cancer.

Are there any seizure or migrane foundations/websites that would have such researched information?

My migraines are caused by the craziest little things...a glare on a computer screen, filtered light in a restaurant, walking to the mailbox in too bright of sunlight. I always have my sunglasses with me. They're on my eyes or on the top of the head...morning to night. My eyes are that sensitive and my headaches and migranes trigger easy.

I agree there should be a school wide ban, not just an individual ban, and I'll bet that's right around the corner to being announced. It appears that someone in the classroom is being affected by it. Change the shoes. At a minimum they're highly distracting and unnecessary in a classroom.

And while I'm on my soapbox, to all you parents that think those squeaky shoes are adorable on little Suzy. They're not. They're irritating beyond belief.

I doubt you will get the same response from the Epilepsy Foundation as you do from the manufacturer.

Denise in MI

 

[dzorn]

I just called & talked with the Sketchers customer service.

There is no way to disable the lights.

This is the 1st that they have heard about a school banning the shoes & it's the 1st they have heard about someone saying the lights could cause a seizure.
She contacted the lab & called me back to let me know that Strobe lights cause seizures & have to have a frequency of 20-50 cycles per second. Sketchers are blinking lights & not strobe lights & the shoe cycles are way below that. The lab is preparing paperwork to e-mail me the frequency rating of the shoes.

I asked if any cases had been reported to them about seizures & she said there have been none.

•The flicker of the light source, and the "frequency" at which the light changes. In other words, how many times the light flashes in a second. Generally, flashing lights between the frequencies of five to 30 flashes per second (Hertz) are most likely to trigger seizures. In order to be safe, the consensus recommends that photosensitive individuals should not be exposed to flashes greater than three per second.

From a few sources just copied one so did Sketchers give you the frequency since they don't seem to know what other sources do. Way below 20 seams to be a the range that the Epilipsey Foundation says to avoid.

Denise in MI

 

[suzanna1066@comcast.]

If I were the school, a note would be going home but it would simply say the shoes are banned because they are annoying and distracting. No doctor needed for that.
School is not a democracy and they can ban anything they want. There was lots of stuff I wanted to wear but couldn't when I was in school. Back then, we just dealt with it and moved on.

 

[NEVERENOUGHWDW]

I understand the law..but A doctor can still write something stating that "the lights from the shoes could cause seizure. doesnt have to be the child's doctor

My daughter had to get a note from her ped stating the she is highly allergic to bug bite before her school would let her take any medicine at school..

Hopefully it is kept in a secured, private area or else it is a HIPPA violation.

Tigger1 there has been people on this thread that have seizure disorder & it has caused a concern.

 

[Hannathy]

If I were the school, a note would be going home but it would simply say the shoes are banned because they are annoying and distracting. No doctor needed for that.
School is not a democracy and they can ban anything they want. There was lots of stuff I wanted to wear but couldn't when I was in school. Back then, we just dealt with it and moved on.

Yes but there are still procedures and rules in place that need to be followed. For example the Janitor just can't decide he hates Mickey Mouse and declare no one at his school can wear anything with Mickey on it. Or as in this case only 1 child can't wear Mickey. It has to go thru the proper channels and fit certain criteria and probably be approved "downtown" (administration, possibly even the legal department)

 

[PrincessKsMom]

We'll just have to agree to disagree because to me, that sounds selfish.




I would never expect a school district to hire a doctor to write such a letter. As has been pointed out here, there are links showing that flashing lights can trigger seizures.

Hopefully it is kept in a secured, private area or else it is a HIPPA violation.

Tigger1 there has been people on this thread that have seizure disorder & it has caused a concern.

And there have been people on this thread that said there are many causes of seizures: the color red, computer screens, TV screens, striped shirts, smells, blinking lights, flashing lights, sunlight, driving at night, driving during the day, stress... where does it end. Obviously every case is different. So what if there are kids in the school who are prone to seizures, migraines, asthma, sensory issues, texture issues, noise issues, hearing issues, allergies...how do you accomodate everyone?

 

[tiggger1]

Hopefully it is kept in a secured, private area or else it is a HIPPA violation.

Tigger1 there has been people on this thread that have seizure disorder & it has caused a concern.

And people on this board have never lied or embellished the truth before

I did say besides that people on this thread and honestly I find it very hard to believe that IF they did cause seizures that the only ones that had issues are on this board. I have yet to find ONE other message board or website that someone has had even connected light up shoes and seizures, let alone had a seizure because of one...

 

[lemondog]

And people on this board have never lied or embellished the truth before

I did say besides that people on this thread and honestly I find it very hard to believe that IF they did cause seizures that the only ones that had issues are on this board. I have yet to find ONE other message board or website that someone has had even connected light up shoes and seizures, let alone had a seizure because of one...

I witnessed a seizure and no matter WHAT anyone on this website conjectures, it WAS caused by the lights on my DD's sneakers. My coworker was sitting in her office, overheads lights were off, a small amount of light coming from her table lamp, plus sunlight from the windows. She was FINE, talked to my DD for a minute, suddenly got a strange look, almost seemed fixated on the shoes, and in less than 30seconds was on the ground seizing.

Usually we could tell when one was coming. She would get very spacey and not really look you in the eye. I would say probably 90% of the time we could sense one coming...spend enough time with a severe epileptic and you'll become very attuned to the subtle changes that occur prior to a grand mal. There was NOTHING precipitating this seizure, it literally came from out of the blue.

You can say all you want, but I still 100% FIRMLY WITHOUT A DOUBT believe that seizure was caused by DD's shoes. And that was the last pair of blinky shoes I ever bought.

 

[DawnCt1]

Who's doctor? HIPPA laws would prevent that.

At the parents' request a physician can write a confidential note to a school nurse. "Please limit Sally's exposure to flashing lights in the classroom".

 

[tiggger1]

I witnessed a seizure and no matter WHAT anyone on this website conjectures, it WAS caused by the lights on my DD's sneakers. My coworker was sitting in her office, overheads lights were off, a small amount of light coming from her table lamp, plus sunlight from the windows. She was FINE, talked to my DD for a minute, suddenly got a strange look, almost seemed fixated on the shoes, and in less than 30seconds was on the ground seizing.

Usually we could tell when one was coming. She would get very spacey and not really look you in the eye. I would say probably 90% of the time we could sense one coming...spend enough time with a severe epileptic and you'll become very attuned to the subtle changes that occur prior to a grand mal. There was NOTHING precipitating this seizure, it literally came from out of the blue.

You can say all you want, but I still 100% FIRMLY WITHOUT A DOUBT believe that seizure was caused by DD's shoes. And that was the last pair of blinky shoes I ever bought.

according to the epilepsy foundation , many factors must combine to trigger the photosensitive reaction. heck what you told us without your dd shoe could have cause a seizure..Sunlight through a window is trigger especially with her overhead lights being off

 

[Hannathy]

To be fair this was a women with completely uncontrolled seizures, having a massive amount of seizures, she is an outlier and can not and would not be considered in statistics. Her seizures were so out of control that no one could say what was causing them. She made work change the lights and she still had a huge amount of seizures so who could say what was causing hers. You can't make a decision affecting hundreds of people on 1 anomaly.

 

[tiggger1]

At the parents' request a physician can write a confidential note to a school nurse. "Please limit Sally's exposure to flashing lights in the classroom".

a school wont do anything with just the note, they will have have a meeting and to do a 504 plan. Believe me I know. Heck we had to do a 504 plan for my son stating he needs a sensory wedge cushion for his therapies through the school and he isnt even in pre school yet. even though his speech teacher had one and he was using it, we had to make it official...

i am not stating that OP school didnt already do this, but its not as easy as writing a note...

 

[Jaime4004]

OP, is your nurse even a "real nurse"? I know some schools do not require registered nurses just reg people who take a first aid class.. for all we know the "nurse" might know someone who has seizures and headaches and know that some lights can cause seizures and panicked...

I have been reading this since it started and I am torn. My daughter has these shoes and they are not that bright. She wore them all last year to school. So did most of the girls in her class. Teacher never complained, principal told her they were cool and she wanted a pair.

If in deed they are causing a medical issue then I would want to see it in writing from the doctor. We had an issue when I worked at a special needs summer camp where a parent claimed that her daughter would have grand Mal seizures do to the use of the microwaves. At the open house she freaked out because her the same building as a microwave just in case it got turned on...She also was not allowed to eat anything microwaved. We had to move the microwave out of the kitchen to the shed. it was a PITA having to run from the kitchen to the shed whenever we needed to reheat a kids food especially in the rain. The last day of camp was parents day and dad showed up without mom( they were divorced) and he overheard another staff person talking about how the microwave could be brought back next week and told us that " his ex-wife was a nutcase and that dd had only had only had 1 seizure (due to a fever) and had NEVER had a seizure due to microwaves but mom heard about it could possibly happen so she banned them jic

Exactly my problem! We all know those over-reactive parents. I think that most of the people who would allow their child (including me) to wear the shoes, are arguing the validity that the shoes cause a medical problem. I'm a nurse, too, and I don't buy it. Even though it drives some of you crazy, yes, I want proof. A simple letter from a parent to the class, stating that the shoes have caused their child a problem in the past, would be all the proof I need. I would definitely leave them at home for the sake of that child. Not wearing them because "flashing lights" cause problems for some people with epilepsy and it could potentially cause a problem is not enough. We all know that flashing lights can be a trigger, but within certain frequencies, which these shoes don't meet.

 

[mamacatnv]

Exactly my problem! We all know those over-reactive parents. I think that most of the people who would allow their child (including me) to wear the shoes, are arguing the validity that the shoes cause a medical problem. I'm a nurse, too, and I don't buy it. Even though it drives some of you crazy, yes, I want proof. A simple letter from a parent to the class, stating that the shoes have caused their child a problem in the past, would be all the proof I need. I would definitely leave them at home for the sake of that child. Not wearing them because "flashing lights" cause problems for some people with epilepsy and it could potentially cause a problem is not enough. We all know that flashing lights can be a trigger, but within certain frequencies, which these shoes don't meet.

I agree with what you said except a note from a parent would not do it for me. IMO a school should not have to create a policy or ban an item on a note from a parent.

There are far to many whack job parents out there. I've met them, dealt with them and was raised by one. I want facts, supported by studies with rock solid proof. Its not about a pair of shoes to me its about having my life impacted because of a whim of another and yes I view this subject as being a whim of someone. Substantiate that whim properly and I'm a huge follower of rules. Make it up as you go along? I don't think so, not to me or my kids.

If parents want an accomodation then they better darn well go thru the proper channels.
Harsh, maybe, but as has been stated/asked over and over and no one has really answered, where do we draw the line? I draw the line at unsubstantiated, unproven, conjecture, assumptions and suppositions. A bunch of people on a message board who "have a friend" a "coworker" or "know/believe that......" is not supported rock solid proof to me.

 

[onescgirl]

Sorry to leave the subject update hanging. I worked today & do not get on disboards while I'm teaching. I teach at a college, so I only work a few days a week.
I'm off on Monday, & I plan to go to the school & inquire more. I wanted to give it one more day to see if other children were still wearing their 'Sparkle' shoes before I said anything. They are still wearing them.

Our nurse is a RN nurse. The school nurses in our district are always RN's.